Yu gɛt padi we rili lɔng, in an ɛn fut lɔng, ɛn we smɔl smɔl? We wi si pɔsin lɛk dat, wi kin tink se i go fayn fɔ spɔt lɛk baskɛtbɔl. Bɔt tide wi go tɔk bɔt wan wɛl bɔdi prɔblɛm we kin kam wit dɛn kayn bɔdi ya, we wi nɔ kin tɔk bɔt bɔku, bɔt i kin rili impɔtant. Dat na di sik we dɛn kɔl Marfan Syndrome. I kin afɛkt di at mɔ, so i rili impɔtant fɔ no bɔt dis.
Fɔ tɔk am simpul wan, wetin na Marfan Syndrome?
Marfan syndrome na wan jεnεtik kכndyushכn we de apin na wi jin dεm. dis kin kכz fכ di ‘kכnektiv tisu' na wi bכdi we nכ de divεlכp fayn fayn wan. Tink bɔt wi bɔdi lɛk bildin. Ɔltin na dis bildin, lɛk di brik, di wɔl, ɛn di ruf, dɛn kin ol am togɛda ɛn kip am strɔng wit simen. semweso, di kכnektiv tisu na di ‘glu’ we de εp fכ ol כltin na wi bכdi, lεk di כgan dεm, di bon dεm, εn di bכdi vεsεl dεm, tכgeda εn kip dεm strכng.
pan pɔrsin wae gɛt Marfan syndrome, di ‘gum’ ɔr kɔnɛktiv tisu na di bɔdi wik. I tan lɛk se yu de bil os wit simen we nɔ dia. Dis kin afɛkt bɔku say dɛn lɛk di yay, di lɔng, ɛn di skel sistɛm. Bɔt di bad bad tin dɛn we kin apin to wi at ɛn di men blɔd vesel dɛn.
Wetin mek dis kin afɛkt di at bad bad wan? Tu men prɔblɛm dɛn!
wik kכnektiv tisu kin pwεl tu men pat dεm na di at.
1. Aorta: Dis na di men, big blɔd vesel we de kɛr blɔd frɔm wi at to di wan ol bɔdi. Jɔs lɛk di men paip sistem we de kɛr wata kɔmɔt na di wata tank na wi os go ɔlsay.
2. At Valv: Dɛn tin ya tan lɛk smɔl smɔl domɔt dɛn we de insay di at. Dɛn valv dɛn ya de mek shɔ se blɔd de flɔ na wan say nɔmɔ.
Naw lɛ wi si wetin di tin dɛn we kin apin to dɛn tu pat ya.
1. Wetin kin apin to di aorta?
Pɔsin we gɛt Marfan syndrome gɛt wik kɔnɛktiv tisu na di wɔl dɛm na in aorta. Dis kin mek wi gɛt tu men prɔblɛm dɛn:
- Aortic Dilation: Nɔmal wan, di blɔd vesel kin fleksibul. כltu, bikoz fכ dis wik, di aorta de bigin fכ big εn big sכmtεm, i nכ de ebul fכ bia di prεshכn we di at bit de mek.
- Aortic Aneurysm: Sɔntɛnde dis wayd nɔ kin jɔs stɔp. Di pat we wik pas ɔl na di at kin bigin fɔ bɔl lɛk balɔ. Dis na wetin wi kin kɔl ``Aortic Aneurysm''. Dis na di kɔmplikeshɔn we denja pas ɔl fɔ gɛt di sik we dɛn kɔl Marfan syndrome. Bikɔs dis bulge we tan lɛk balɔ kin bɔs (rupchɔ) ɔ te (dissection) ɛni tɛm. Na imejensi we kin mek pɔsin in layf de pan denja.
2. Wetin kin apin to di at valv dεm?
wik kכnektiv tisu kin mek bak di at valv dεm nכ de wok fayn fayn wan. Dɛn kin wik ɛn nɔ kin kam nia dɛnsɛf fayn. Dis na di rizin we mek:
- Valve Regurgitation: If wan valv nɔ lɔk fayn, blɔd kin lik bak insay di at. Dis kin mek di at wok tranga wan fɔ pɔmp blɔd to di bɔdi. As tɛm de go, dis kin mek yu at pwɛl. di valv dεm we dεn kin afekt pas כl na di Aortic Valve εn di Mitral Valve.
- Mitral Valve Prolapse: insay dis kכndishכn, di mitral valv we de na di lεft say na di at de wik εn i nכ de kכloz fayn, bכt insted i de fold bak.
De impɔtant tin na dat, lɛk nayn pan tɛn pipul dɛm wae gɛt Marfan syndrome go gɛt hat ɔr aortic prɔblɛm, so i impɔtant fɔ no bɔt dis.
Wetin na dɛn at sik ya? Aw wi kin no dɛn?
Bɔrku tɛm, nɔr kin gɛt ɛni sayn fɔ de na di fɔs stej. Bɔt dɛn sayn ya kin apin as di aorta de wayd ɔ di valv prɔblɛm dɛn de wɔs. If yu gɛt wan ɔ mɔ pan dɛn tin ya, i rili impɔtant fɔ go to dɔktɔ.
| Di sayn we de sho se di sik de | Wan simpul ɛksplen |
|---|---|
| Pen na di chɛst ɔ di ɔp pat na di bak | I kin denja mɔ if di pen kin kam wantɛm wantɛm ɛn i kin rili bad. |
| Fɔ blo shɔt ɔ i nɔ kin izi fɔ blo | Di taya we kin kam we yu waka smɔl ɔ du wok. |
| Palpitations (fɔ fil lɛk se yu at de bit fast) . | Fɔ fil lɛk se yu at de bit de chenj ɔ yu chɛst de bit. |
| Fɔ fil se yu diziz ɔ yu ed yu nɔ gɛt bɛtɛ trɛnk | Fɔ fil diziz we yu tinap ɔ grap wantɛm wantɛm. |
| Taya ɛn wik we nɔ kɔmɔn | Fɔ fil taya ɔltɛm fɔ natin. |
| Di leg ɛn fut dɛn kin swel | I kin bi sayn fɔ se di at nɔ de wok fayn. |
Aw di dɔktɔ kin no dis sik klia wan?
Fɔ no bɔt di sik we dɛn kɔl Marfan syndrome kin tranga smɔl bikɔs nɔto ɔlman gɛt di sem sayn, so dɔktɔ go luk pan sɔm tin dɛn.
- Fɔ chɛk yu bɔdi: Di dɔktɔ go chɛk yu ayt, yu an ɛn yu leg lɔng, yu finga lɔng, yu chɛst shep, yu yay, ɛn yu spayna.
- Famili mɛdikal istri: Bikɔs dis na sik we pɔsin kin gɛt frɔm in mama ɛn papa, dɛn go aks yu if ɛnibɔdi na yu famili dɔn gɛt dɛn sik ya ɔ day bikɔs in at dɔn stɔp wantɛm wantɛm.
- Spɛshal tɛst: Dɛn kin du bɔku tɛst fɔ no di rayt kɔndishɔn na di at.
- Echocardiogram: Dis tan lɛk we dɛn de skan di at. i kin si klia wan tin dεm lεk di sayz fכ di aorta εn di wok we di valv dεm de du.
- Ilɛktrokardiogram (EKG): Dis kin ɛp fɔ chɛk di ilɛktrik aktiviti na di at, dat na fɔ si if ɛni prɔblɛm de wit di ritm we di at de bit.
- Jɛnɛtik Tɛst: Na blɔd tɛst fɔ no if yu gɛt di jenɛtik mutation we de mek yu gɛt Marfan syndrome.
- Fɔ avɔyd fɔ du tin dɛn we de mek yu at pwɛl pasmak. Fɔ ɛgzampul, spɔt dɛn we gɛt bɔku impak lɛk fɔ lif wet, rɔgbi, ɛn futbɔl nɔ fayn.
- If di aorta wayd we denja, dɛn kin du ɔpreshɔn fɔ mek i nɔ te (dissection). I bɛtɛ fɔ plan fɔ dis bifo i bi imejensi.
- Di dɔktɔ kin gi yu mɛrɛsin lɛk ``Beta-blockers'' ɔ ``ARBs''. Dɛn tin ya kin wok bay we dɛn kin kɔntrol di blɔd prɛshɔn ɛn ridyus di prɛshɔn we de na di aorta. dis de slo di rεt we di at de big.
- fכ pul di pat we dεn dכn pwεl na di aorta εn ripεr am wit atifishal tiub (graft).
- Ripair ɔ riples di at valv dɛn we nɔ de wok fayn wit atifishal valv.
- i impɔtant fɔ mek dɛn du skan lɛk ɛkokadiogram wan tɛm insay di ia fɔ wach di sayz we di aorta gɛt. Dis kin ɛp fɔ no ɛni prɔblɛm kwik kwik wan if dɛn kam.
- we di dayamita fכ di aorta pas 5 sεntimita.
- If di at de big kwik kwik wan insay wan ia.
- If pɔsin na yu famili gɛt histri fɔ di aortic dissection.
If pɔrsin na yu famili gɛt dis sik ɔr gɛt dis kayn sik, fɔ tɛl yu dɔktɔ bɔt am na big ɛp fɔ no di sik.
Okay, naw wetin na di tritmɛnt dɛm fɔ dis?
Marfan syndrome nɔr kin ebul fɔ wɛl ɔl. Na bikɔs na sɔntin we de insay wi jin. Bɔt, rili fayn tritmɛnt dɛn de fɔ kɔntrol di damej we i de mek to di at, fɔ mek i nɔ gɛt siriɔs sik, ɛn fɔ mek pipul dɛn liv nɔmal layf. Dɛn kin sheb di tritmɛnt to tu men pat.
| Tritmɛnt dɛn we Nɔ De Ɔspitul | Ɔspitul tritmɛnt |
|---|---|
Di chenj dɛn we pɔsin kin chenj di we aw pɔsin de liv in layf: | Wetin mek i nid fɔ du ɔpreshɔn?: |
Di mɛrɛsin dɛn we dɛn kin yuz: | Di kayn ɔpreshɔn dɛn we dɛn kin du: |
Di dɔktɔ dɛn we dɛn kin chɛk ɔltɛm: | Dɛn kin se dɛn fɔ du ɔpreshɔn fɔ: |
Imejɛnsi sityueshɔn dɛn we nid fɔ admit na ɔspitul wantɛm wantɛm! (Wɔnin Sayn dɛn)
Dɛn sayn ya kin bi sayn fɔ se di aorta dɔn rɔp ɔ dɛn dɔn kɔt am. If ɛni wan pan dɛn tin ya apin, go na di Imejɛnsi Dipatmɛnt (ETU) we de nia yu ɛn nɔ de te.
| If yu gɛt dɛn sik ya, go na di ETU wantɛm wantɛm! | |
|---|---|
| - Pen we yu nɔ go ebul fɔ bia na yu chɛst, bak, ɔ bɛlɛ . | - I kin tranga fɔ blo bad bad wan. |
| - Lɔs pan kɔnshɛns. | - Nɔmb ɔ tingling na wan pat na di bɔdi. |
| - Fɔ swet pasmak, kol skin. | - Nɔs ɛn vɔmit. |
I pɔsibul fɔ liv fayn wit di sik we dɛn kɔl Marfan syndrome?
Fɔ tru, na yɛs! Bɔku ia bifo dis tɛm, di layf we pipul dɛn we gɛt dis sik kin liv nɔ bin shɔt. Bɔt tide, bikɔs ɔf di advans tritmɛnt dɛn we dɛn de gi am, we dɛn de chɛk am ɔltɛm, ɛn we dɛn de du ɔpreshɔn pan am, pɔsin we gɛt Marfan syndrome kin liv fayn layf, ivin te i ol 70 ɔ 80 ia, jɔs lɛk di avrej pɔsin.
Di tin we impɔtant pas ɔl na fɔ kɔntinyu fɔ tɔk to yu dɔktɔ ɔltɛm, fala in instrɔkshɔn dɛn gud gud wan, du tɛst di rayt tɛm, ɛn yuz yu mɛrɛsin dɛn kɔrɛkt wan.
Mɔ if uman we gɛt Marfan sindrom de plan fɔ gɛt bɛlɛ, i fɔ rili go to dɔktɔ we de mɛn in at ɛn dɔktɔ we de mɛn uman dɛn bifo i gɛt bɛlɛ. Bikɔs di strɛs pan di at kin bɔku we uman gɛt bɛlɛ, dɛn fɔ tek tɛm spɛshal.
If yu ɔndastand dis sik, tek di step dɛm we yu nid, ɛn liv yu maynd, yu kin protɛkt yu at ɛn liv wɛl, lɔng layf.
Mɛsej we dɛn kin kɛr go na os
- Marfan syndrome na wan sik we pɔsin kin gɛt frɔm in mama ɛn papa we kin mek di bɔdi in kɔnektiv tisu dɛn wik.
- Dis kin gɛt siriɔs ifɛkt pan di at ɛn di men blɔd vesel, di aorta.
- di aorta dilayshכn εn aneurysm na di kכmplikεshכn dεm we de mek i denja pas ɔl.
- I impɔtant fɔ go to di dɔktɔ di tɛm we dɛn dɔn sɛtul ɛn du skan lɛk ɛkokadiogram.
- Nɔ du tin dɛn we go mek yu at pwɛl, lɛk fɔ es ebi ebi tin dɛn.
- Yu fɔ no bɔt sayn dɛn we de wɔn yu, lɛk we yu de fil pen wantɛm wantɛm na yu chɛst.
- If yu de manej ɛn trit yu fayn fayn wan, yu go ebul fɔ liv yu layf we nɔmal ɛn lɔng.
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